Azoospermia support - Part 2

[WhiskeyInTheJar33]

@2022ttc
@Ljp2022
@lemons44
@IslaO
@Carla2601
@TheFanciestPants
@HoustG
@Sleeter0893
@Creatingspace
@Nats140
@pomdownunder1
@Annies1992
@Lily1994

As the old thread is almost full, I thought I'd start up a part 2 so that we can all continue our journeys together!
Apologies if I have missed anyone x

@wateringcanface so sorry you have been waiting so long. Ours has been a similar process. You just feel like you are constantly left waiting. So frustrating that it feels like we have to jump through so many hoops to get to where we need to be.

We have decided to wait for our NHS appointment in April and if they say SSR will be another long wait we are going to go privately. We have already had an initial private consultation and they have said they can probably fit us in withing a couple of weeks for surgery if we want it that quickly. We are not sure if we can afford both SSR and Ivf privately so we may consider trying to still get the ivf side of things on the NHS depending on how the SSR outcome xx

Hi @wateringcanface so sorry they are messing you around like this. A year wait is just crazy. Is there a way you can make a formal complaint about your partners surgery or escalate the complaint upwards? Just wondered if that may help or if the original surgeon can do anything. I feel so angry on your behalf. My husband sometimes feels a lot of anger and resentment that his azoo was also caused by botched surgery so I know how you must be feeling. Could it even be worth looking into those claim companies for medical mistakes? Or at least threatening them with this?

In terms of private wait times, ours was only a few weeks I think but you have to have a private consultation first x

Hi all,

hope everyone is well.
Its so comforting to see other ppl stories sometime this journey feels quite lonely.

I know things can be very different between surgeries/clinics and whether you is private or NHS so I was wondering if anyone is or has been recently on waiting list for micro tese + ICSI at Kings Fertility referred by NHS ? I find very difficult to get any information from them in regards to timelines so far every step of the way it has taken way longer than we thought and my partner and I are now quite anxious and worried unfortunately we can’t afford private and I am not that young anymore (39y) so every couple of months count. We had an appointment at Kings in February and they said next step is receiving a letter with the date for the micro tese granted she did say 2 months waitlist but since we received nothing I sent an email and the only reply saying its actually 3 month wait I asked for an more specific date range and they can’t not provide. We just want a date so we can also make life plans. We have been on this limbo with NHS for a year and a half now just to get here and I fear how long is the wait for next stage after the extraction provided is successful as well. :( its on of those if only I knew we would have started to try earlier but we never think we will have issues do we ? anyway if anyone has any experience with Kings/NHS would love to hear about it.

Hi everyone,

It was surgery day today and he had an obstruction as was suspected. So pleased that they managed to find some and they have even attempted a reconstruction so there is the potential in the future that he may no longer have Azoospermia.

Looking forward to moving forward with next steps now. We have a call scheduled with the IVF clinic in a couple of weeks.

x

@24b really pleased to hear that! Wishing you all the best for the onward journey and I really hope that you never have to look back x

@Nats140 thanks for your reply! You give me hope that an MTESE can work after a failed TESE. Really hope your next chspter goes smoothly! Xx

@24b that’s great news it went well! Pleased for you. Was it an mtese? What was your story again? Sorry- it’s not so easy to look back through the thread- wish there was a way to search on here.

Thanks so much @2022ttc & @Appl3Pips. I know we still have such a long way to go but nice to have some positive news for a change.

Yes it was a mtese :)

No worries, I often find myself rereading the thread to refresh my memory on everyone’s journeys!

He was diagnosed in Nov 2023 after a NHS SA test. I’d already had a fertility consultation with an IVF clinic that works in conjunction with Dr Ramsay as I was convinced the issue was with me as I’d had some irregular cycles since coming off the pill but the NHS couldn’t figure out why after blood tests / scans etc.
So when we got the azoospermia diagnosis we then got an appointment with Dr Ramsay for Jan. We got his genetic and blood test results back in a follow up appointment with him in mid Feb which were all normal which suggested he had an obstruction so he recommended we go ahead and schedule the mtese.

@24b did dr Ramsay perform the mtese? How was it and how is your OH feeling? We have ours scheduled for mid May and my husband is really nervous

@2022ttc yes he did! He really is the most lovely man and all the staff there took such great care of us.

My OH was so nervous too and was so emotional when he found out it had been successful. A nurse came in and said he’d made all the staff cry after they saw his reaction.

I’m surprised at how well he is feeling so far. I think he may be in a bit more pain tomorrow when the anaesthetic may have worn off a bit more but I can keep you posted on the recovery process and really hoping yours goes well in May!

@24b ah what a relief for you and such a win! Did J Rams put him on any meds prior? Did they say they got a decent amount of good quality? When do you think you’ll start ivf and are you doing the ivf on nhs or private? So sorry for all the Q’s! 😬

@turkl0802 welcome. I don't have any experience with Kings unfortunately. There may be one of us at Kings but can't be certain. My advice would be to keep calling for an update and ask for cancellation if possible.

@24b congratulations on successful surgery! So pleased for you. Wishing you all the best for your next steps!

@Appl3Pips Don’t be sorry! It sounds like our partners are in quite a similar position.

No he didn’t put him on any medication actually. I started getting a bit nervous about this as reading through this thread it seems in most cases he usually does but he kept saying to us from all the tests he’d done (genetic, hormonal, physical) he was fairly confident he was producing it but it just couldn’t get out so I guess he didn’t think it was needed?

When he came and spoke to me it’s all a bit of a blur as I was just so overwhelmed but I’m pretty sure he said they found lots of good quality but looking forward to receiving the follow up letter to refresh my memory ha!

We’re hoping we can start fairly soon as we’d already had the initial consultations with the clinic who had looked at my blood tests and done a scan etc on me before we knew about the azoospermia. Our consultant has catch ups each week with Mr Ramsay so suggested we schedule a call in for 15th April to then move forward with next steps following the surgery. This is privately, we’re fortunate that we have some savings behind us and our GP has told us the waiting time in our area is 12-18 months which feels too long for us. We also quite like the idea of staying with the same clinic throughout who have been on the full journey with us etc. We then don’t need to move the sperm around and the nurses yesterday were saying they’re looking forward to seeing us back for egg collection which was so nice.

Really hope your appointment in May with him gives you some more answers and helps to get a plan in place for you! Couldn’t recommend him enough.

@turkl0802 sorry you find yourself here and that the process has been frustrating for you.

My partner and I are at Kingston Fertility but they do not have an embryology department so it's linked with Kings. This is where my eggs will be taken for fertilisation and also where my husband has been referred to for the andrology department.

We were referred to Kings for andrology on the 5th of March and we're told it would "be months rather than weeks" before an appointment. I called Kings to get a better idea of timings. They told me September time (!!). However, they called my partner on the 19th of March offering him an appointment for the 22nd of March! Unfortunately we couldn't make it as we were away but they managed to offer us an appointment on the 18th of April which we were really pleased with given we were told that it would be a lot longer. As I understand it, this is our initial consultation with an expert in azoospermia and for them to tell us what treatments are needed and if mtese is the next step. (His second sample had some sperm but only half a million and immotile).

I think we are slightly behind you in terms of timings but my advice would be to keep calling and asking for cancellations to see if they can fit you in sooner.

Let us know how you get on!

@24b congratulations! That is great news and must be such a relief. Wishing you luck in the next steps.

We have had our appointment with Jonathan Ramsey - still nothing to suggest that the medication has had an impact but need to wait now and see him again in three months which feels like so far away at the moment.

Has anyone had sperm mapping/FNA procedure completed before an M-Tese? Looking like that might be our next steps.

Thinking of you for your appointment @2022ttc and really hoping for a positive outcome for you xxx

@sackofpotatoes123 we did the 3 month wait too. Went for tests last week and seeing dr ramsay on Thursday this week - really really hoping for some improvement but trying to keep my mind very aware of the fact that it's more the likely that it won't have worked. It's all such a gruelling process. When we asked dr ramsay about the value of mapping he said he wouldn't advise it but we didn't really elaborate much on it, all he said was that it would be costly.

@Sammysquidge Sounds like we are in a similar position. We decided that we had enough time initially to go the NHS route, but everything about the NHS route has taken so long, firstly even getting the referral, which was 2 months of back and forth between the urologist and GP because they kept telling each other it was their job to do, then from referral, was a 4 month wait for first appointment. I thought from that appointment we would join the IVF waiting list. Turns out they need to put us on the waiting list for the TESE first, and if sperm is found, then they put us on the IVF waiting list, they originally told us the TESE waiting list is 5-6 months, but when I rang last week, its actually closer to a year, and then 5-6 months from there on IVF waiting list. I do not know if that is the norm everywhere, but while I'm in no urgent rush anymore, the thought of this time next year still being waiting around still having not begun the IVF process is infuriating.

@lemons44 I'm sorry your husband feels a similar way, I get it, because it's a situation where you think if that surgery were performed on a different day, or just done slightly differently, you wouldn't be in this mess!

I might do a complaint, my issue isn't with the surgeon or surgery, my husband needed the surgery, and it changed his life for the better despite the complications, it is listed that there is a very small (something like 0.1%) risk associated with the surgery that it can damage the pelvic nerves, so we are not claiming that any negligence or malpractice went on, it is the aftercare that we are bothered by. The fact that a 29-year-old male who was vocal about wanting to start a family soon came out of a surgery infertile, with urine flow issues, and some erectile dysfunction (which thankfully has mostly resolved now) and literally no one, not the surgeon, GP, the urologist offered any advice or steps on how to sort this, he had no scans, the only investigation he had was a physical investigation (a urologist felt his penis and said it seems fine) and a urine sample (which we had to request), then they gave him a prescription, and discharged him! Even when we eventually got to andrology, they have done no investigations either, just put him on a waiting list for TESE.

@24b thank you for getting back to me with all my Q’s! It has given me some hope that an MTESE will be successful with us. That is good to hear that you have had a good experience with him, we are looking forward to hearing his expert advice next month. I hope your next step goes well, keep us updated!

@2022ttc oh really hope it goes well for you on Thursday 🤞🏻 hope you are keeping your mind busy in the meantime.

@2022ttc thank you. He basically recommended we go for a synchronised mtese and a fresh transfer so suggested either an FNA and then, if successful, the mtese or straight to a mtese but to consider having some donor sperm on hand as a back up. I guess not to put us through an egg collection unnecessarily. All seems so overwhelming...and expensive!! Have another three months to hope it won't be needed.

Sending you my thoughts for Thursday.
Hope you get the outcome you deserve xx

Thanks @24b and @sackofpotatoes123

When we asked dr ramsay if we should do an egg retrieval on same day he said he wouldn't recommend it for us (I think he was trying to manage expectations that our chances of finding sperm are really low 😪.. he said he would recommend the mapping or the egg retrieval on same day. He said let's first see if we find sperm.. though he did go on to say that fresh sperm is better than frozen so it's all very confusing.

I've been very aggy this week, my husbands been a bit distant too. I think we both are just super tense about how things will pan out

@2022ttc
It's hard not to overthink it isn't it? When I read your post, I read it is a positive that he didn't recommend it for you and saw his donor sperm recommendation as him managing my expectations. I guess it's important for us both not to read too much into it. I did find he was very receptive to any direct questions. (Didn't quote mumsnet as my go to source, mind 🤣) but it's hard to remember everything you want to ask when you are in there isn't it!

Sorry to hear it's a been a hard week - it is totally understandable. Really hope you get the outcome you want on Thursday or at least a clear path forward x

Hi all. Reading all your messages about long waiting times and it's really the same for us too. I think it's been about 2 years now since I first asked to be referred for investigations! I'm 37 now so getting a bit panicky about time not being on our side. We lost one year waiting to be seen again at the fertility clinic just for a gp registration issue.
We were finally seen again in February, had another month lost for me to repeat my fsh bloods as they were too high initially. Then got our referral to bourn hall accepted.
They have offered us an initial consultation with Dr wiseman, andrology for 11th June. We also finally have our genetic counselling appointment next week after waiting 9 months for this!
I asked bourn hall about SSR and they said likely 6-8 weeks after the initial consultation. They said there's no difference with them whether we are nhs patients or private.
So basically things are finally moving now which is great, but still some way to go.

So great to hear about your success @24b thanks for sharing 😊

Hi everyone, we had our appt with Dr Ramsay yesterday. Unfortunately no changes from the Anastrozole, still a 0 sperm count. We were provisionally booked in for the microtese for May and were due to confirm and sign all the consent forms etc yesterday but while we were sat there my husband started to have doubts over the procedure and instead inquired about the FNA mapping as that's less invasive (he's had a very difficult medical background and history of being operated on). Dr Ramsay spoke through all the risks and benefits associated with both but emphasised that it would double the costs if we did the mapping and then also proceeded with the microtese. we were unable to decide so he told us to go off and think about it as we are booked in for May in any case. Having left his office, we were both numb.. I was probably a bit more frustrated as the way I see it is that we have to have the procedure done, we have no choice, so why now is my husband having doubts? I've been in a bit of a state since yesterday as I feel like we are just taking steps backward. I really hate that we are in this situation and feel so resentful. To top things off, my sil announced her pregnancy this week, and made it clear that it wasn't something she planned or was over the moon about, which I really had no words to reply with.

Feeling really sad tonight and isolated and alone with my thoughts. Would be good to chat to anyone that's awake?

Ah @2022ttc sorry to hear the meds didn’t work and that you’re feeling rubbish 😔 this is such a rough ride we’re all on. It’s strange- some days I feel optimistic and other days I feel so sad and hopeless.Your partner is probably just having a wobble, which although frustrating is completely understandable. I’m sure he will come round. Try and stay positive- easier said than done, I know but you are not alone! Don’t lose hope, you’ve got this 💪

@Appl3Pips thank you for your kind words. It's such an awful awful experience overall. I feel like everytime we have an appt i spiral downwards in the weeks after it because it feels like we move further away from the goal. Btw he gave us a 30-40% success %.. Is that similar to what others have been quoted for the microtese?

@2022ttc so sorry to hear this, it must be really hard. I think it's hard as the woman in this situation because ultimately we are on the journey but we aren't in the driving seat so there is an element of feeling helpless when it comes to something we want so much.
Alone is exactly the word I would use to describe tonight too. I got emotional about it yesterday and had a few tears in front of my husband. He was quite cross with me - I think me being upset makes him feel extra pressure. But not being able to discuss it with him or anyone else is a really lonely place. Today he said he is worried it will ultimately come between us. Of course I don't want that at all.

I really hope you are able to plan out your next steps and go from there. Would you be doing a fresh transfer with your micro tese? It's a lot to think about when weighing it all up isn't it? And the money is eye watering.
If it helps, the percentage he gave us was the same.

Sending you love tonight xx